Tuesday, September 20, 2011

Not much brewing

I know I said I would try to write once a week, but for some reason I have been avoiding it. I guess it is because I simultaneously have nothing to say and a lot to think about. I must have a lot to think about - I can't fall asleep at night lately. My mind won't stop, and it isn't (all) cancer-stuff, most is just random nonsense.

This is what happens when I don't really have tv, apparently. That and a LOT of painting my nails different and crazy colors/patterns. :) Have to entertain myself somehow, right?

New work is going well - slow going to set up a lab and actually fill it with stuff, but it is moving along. I am organizing an 'elective' to offer pharmacy students, and I am trying to put together a 'Oncology 101 - Fundamentals of Cancer Biology'. Before they can understand the meds, they have to understand the disease ... well, as well as any of us can understand it. I won't teach it until next academic year (if it even fills with students), but I look forward to educating.

I am also setting up the second incarnation of my mother's memorial effort, this time at Ole Miss, and renaming it the 'Cancer Really Sux Memorial fund' - well, that is if they allow the word 'sux' in something like this. :) If I ever manage to make any profit on the shirts/mugs/etc, this is where the money will be donated. I need to figure out how to market those ... suggestions welcome! I am a scientist, not savvy in business models.

For cancer sucking - not much is going on with Kel, which is actually really difficult to deal with (for us all). Physically, he is fine, and even back to full duty.

But there is a sense of dread with the wait and see approach, especially with (at best) 50/50 odds of cure/recurrence. We both know we should be grabbing hold of the remission and holding on with all our might, but in this case trying to put on blinders to the possibilities isn't prudent. And the waiting feels like if a few cells have escaped, this is just giving them time to grow and take hold again. Heck - I think Kel wants to do the tandem transplant thing 'just to be sure'. Wouldn't happen - WAY to dangerous to try for that reason, but the sitting and doing nothing is hard.

David and I (and Dad) will be back in Tucson for Kel's next bloodwork results in 2.5 weeks, and then it will be wait another month, then another month, etc. So this anxiety will slowly increase over the next 2 weeks, then abate (we assume/hope/pray), then rise - repeat (hopefully) ad nauseum.

At least it is a good excuse to travel to Kel, right?

On the Mississippi homefront, all is calm - David is doing very well in his new school and learning his letters really well. I think he is aching to learn to read, because he is always asking me what something says and telling me the letters and asking me what the word is. So, we are trying to work on sounding things out - not sure if that is the right way to teach him, but we are making progress, I think. The ticks are back (they abated for a bit) with the weather getting warmer, but I gave Saja an anti-tick bath last night, so hopefully that should help. I got a rake to clean up the leaves in the yard too, since I am sure they are contributing to the problem.

Hmmmm, I said I would be positive, right? I have been reading old posts and old facebook entries and I really have focused on the Sux more than the doesn't suck ...



Well, being apart SUX, waiting for cancer to rear its ugly head SUX, the emotional toll this is still managing to take SUX.

Tomorrow is 12 weeks post-RPLND surgery and Kel is recovering well - that DOESN'T suck. Him being back on full duty and getting to be a cop again DOESN'T suck, me getting to develop a course to educate others about cancer DOESN'T suck ... Oh, David being really, really awesome in his new school and getting settled here DOESN'T suck, and having friends and family that almost 9 months later still put up with my whiny posts and care how we are doing DOESN'T suck.

There. That list is a little more positive than not, right?

It is getting close to midnight, and I need to get more than last night's 5 hours, so shutting down the computer now - good night!

Monday, September 12, 2011

Come and gone

Kel that is - he came to visit us here in Oxford, but was only here for <48 hr. He arrived Sat late afternoon and I took him to fly out of Memphis today ~1. Great trip, but WAY to short.

On the upside, it was GREAT for David and Saja, and even old, deaf, Hudson, to see Daddy again (and me too, of course). We were only apart for 2.5 weeks, but it felt like forever.

We got a bit of unpacking done this weekend (I had stalled), rearranged some of the rooms and made the new place feel more like 'home'. Mostly, it was just good to spend time with Kel again.

Our anniversary dinner ended up getting rescheduled to Sunday night at the 'Ravine' which is a tucked away place a few miles from the square. I was taken there during my interview trip, and it was a great place to go back with Kel. Our anniversary tradition is to try a new restaurant every year, so this was a good first one for Oxford. Dinner was great, we had a wonderful new babysitter take care of David and enjoyed a special dinner.

It, of course, has been an eventful year and we talked about it all, laughed a lot, cried a bit, and reminisced mainly about our 10th year of marriage, but also talked about the future, both short and long term.

It is a good thing that we talk about the long term - even mundane stuff like redoing the kitchen in the new place - because we are squashing the fear we both have about the long term being questionable.

Truth is we have no idea. This is a weird place to be in with the whole cancer journey - celebrating the (almost) remission, waiting for the other shoe to drop, and a whole hell of a lot of not knowing anything, really.

Is it done? Is there more? How likely is the cure still? What are the options? What can we be doing? Neither of us are good at waiting, or sitting back and doing nothing. Come on, time to do something more! Kel even said (not last night, a while ago), that he wants to do the high dose chemo just to be sure and get it all. Do it now. Not gonna happen, but I get it.

Nothing else to report - back to me and the dogs in this quiet night. Kel called a little while ago, he is back in Tucson and will be back to work tomorrow. We miss him. Being apart sux, but having a nice weekend together falls in the 'Does not suck' category.

I have spent a lot of time tonight reading through posts over the last year, and I decided I need more 'does not suck', so that is my goal. I don't know how often I will post, since we are in hiatus mode, but I will try for at least once a week and will aim for more positive than negative. Aim ....

With love,

Wednesday, September 7, 2011

Dare we dream to call it ... remission?

Kel got the results from his bloodwork today and finally called me around 12:45 MS time after a grueling morning of nerves for me (and maybe for him too?) ...

The only number that really matters now is his AFP. At last check 4 weeks and 1 day ago (this is important, because the 1/2 life of the protein AFP, the time it takes for 1/2 of it to be cleared from the body is 5-7 days) is was 12.5 ug/L. This time the number was ...

Drum roll please ...

9.7, still marked with a little 'H' next to it on the results sheet for 'High' on the lab values, which this lab reports as normal being <7.51.

Down is GOOD. We have no way of knowing if it actually was lower and this is on the rise, if his normal is just higher than the average person's, etc. Only time and monthly monitoring will tell, but down is definitely GOOD. For now we breath a little better, sleep a little sounder and are relieved for 4 weeks until we go through this again. Although the next time I will be there.

On that note, this is the first appointment I have missed. And it sucked big time. I am a bad wife. :(

Given that I just started the new job in MS about a week ago it wasn't really feasible for David and I to go back yet, we will do that in October for the next appt, but still ... it sucked.

Speaking of David and MS, for those not on Facebook, this has been a rough transition for him and us in general. He is struggling without Daddy here and just Mommy (both halves - Daddy being in Tucson and Mommy being the only one he deals with. Apparently I am just not a good mom (sarcasm, don't worry)). The biggest trouble was at the school he started when we moved to town. They are a great school for learning, and when kids are used to the routine it goes well, but it was a BAD fit for David. After not quite 2 weeks I took him out and enrolled him in another pre-school. He has been at the new school for 3 school days and has done great, other than his teacher learning the limits of his 'dare-devil'ness today - of which there are no limits. No behavior problems, he is happy, all is good.

The other issue we have had with this transition is the wild-life here in MS. And I don't mean of the large variety - the deer that run through our yard are gorgeous. But what they carry with them is disturbing. I first found ticks on David, then on Saja and then all over the house as they fall off of their hosts. We have been fighting this 'plague' for about a week now, and I have bad dreams and wake up nightly about them and dreaming they are all over the bed. I only pulled one off Saja tonight and vacuumed one off of the couch - that is HUGE progress.

So, we are making progress with ticks, progress with David at (another) new school, progress with Kel's #s and my new job is going well! I even have my office just about setup - now onto stocking my lab (Fisher Science Rep should be there tomorrow to talk about a startup lab package and all of the items I need). Woohoo - go science! Time to get back to working on curing that pesky cancer, right?

Kel will be here this weekend, celebrating our 11 year wedding anniversary. I already have the babysitter set and the reservation made for City Grocery on Oxford Square. It should be a nice night, although I am vaguely worried how David will take to Kel coming into town and then not coming with us to dinner on the same day ... oh well, maybe he will be fine, right?

No 'Sux' section tonight, only what doesn't suck and that is being able to comfortably, even if the lab values are a slight bit high, call this cancer in REMISSION! That is my new favorite word. Aretha needs to write a new song 'R-E-M-I-S-S-I-O-N', screw 'RESPECT'. :)

Off to scratch my veritable plethora of mosquito bites now ... goodnight,